Actually, I have a handicap.
Hello there! I’m Yessenia and I’m a 27 year old grad student studying to be a speech/language pathologist. I got into this field for two reasons. In addition to my love of languages, I’ve got a developmental malformation known as Eagle’s Syndrome. This article is the best one especially given its conciseness that I’ve found about it online.
Basically, I’ve got a neck bone that’s too long, and so for most of my life I’ve had most of the problems listed, beginning with severe neck pain and fine motor problems starting in fifth grade and peaking around age 22. However I was not actually diagnosed until I was 24, and I had a partially successful surgery to hack away at the internal skull tusks (i-skusks) later that year. I might have been diagnosed sooner, but my parents were scientologists and there’s an unfortunate bit about clams that was used to explain away my symptoms. That and I guess my astrological sign had something to do with neck pain, I don’t know.
I say partially because the anatomy of one side – unfortunately the side that causes most of the neuropathic symptoms – made it very dangerous to proceed with what was otherwise a very minor surgery, which the surgeon realized as soon as he opened me up. To say I was disappointed when I came out of that surgery to hear I wouldn’t have the complete cure I’d been hoping for would be an understatement. Still, life goes on, and at least I had what I really wanted: an explanation and a prognosis.
What I don’t have is an obvious visible sign of my disability. Not anymore anyway. I spent about a year trying to deal with my worsening symptoms (the styloid process hardens with age) via a neck brace, even though I didn’t know why it helped – just that it did. Just today someone confronted me for parking in a handicap space (“They’re for people with handicaps!”), though he did apologize once I said, “I have a handicap.” I’ve also got ADHD and as you might expect, some anxiety surrounding medical issues like being in hospitals.
What I’d like to spend some time talking about on this blog in part is the catch-22 you often find yourself in as a person with a disability. Because my disability is invisible, I’ve had many experiences where other people are surprised to learn about it or will even insist I don’t have one. I struggle with feeling like I am taking advantage of the system by asking for accommodations I need, because I “look fine.” I’d rather not ask for the accommodations I need (and I am often too afraid to even hand the letters to my professors until the semester’s halfway over and I clearly need help) because I want to pass, to be seen as being on a level playing field, even though the accommodations exist to level the playing field.
But on the other hand, I’ve been the plaintiff in a lawsuit, the gist of which is that they found out about my condition and terminated me, even though I could do the job just fine, because they basically googled my medication and found out it can cause drowsiness. I could be turned away from several jobs, such as with the military or in the public service corps, due to the fact that I take medication. Classmates will ask me if I ‘pop an addy’ before tests. Supervisors tell me I stretch too much and it’s unprofessional (I really can’t not stretch my neck if I’m sitting down for long periods and they know why), or will describe to me the symptoms of my ADHD and say that I’m ‘fucking up.’ When, I say again, they know about my disability, and instead of making reasonable accommodations, one teacher in particular held me to an explicitly higher standard as a result. And as I mentioned, I’m already the plaintiff in one lawsuit. I can’t fight back against it every time. It’s too much.
Point being, if I have enough of a disability to experience the stigma and discrimination from it, is that sufficient to ‘deserve’ the ‘perks’ of having a disability? Or what I want to know is – why is my difficulty keeping track of little day to day things that don’t really matter that much (i.e., if I forgot the form, but I can easily print out another copy of the form, who cares?) considered such a remarkable disability, but my classmates’ inability to understand the big picture of a lot of the medical/physiological things we are studying (that I know both because I’ve got a great semantic memory/reasoning ability, and also because I have so much personal experience having a medical problem affecting the narrow group of nerves/muscles/bones we care about) is not seen as that problematic because they will be able to look it up later?
I can’t tell you how frustrating it is for me, as a person inseparable from my doctor’s patient, to have classmates just not really care to learn the material any more deeply than what will be covered on the test. But hey, they sure do seem professional, don’t they? And seeming professional is the most important part of being a professional anything! /sarcasm
Well before I get too off topic for this introduction, let me just say I’m extremely excited to be blogging for Skeptability and writing about life and litigation as a person with my disability.